The unique experiences of raising a brain-injured child and her two brothers.

Wednesday, January 4, 2012

I'm Responsible For What???

Responsibility. That word is no fun. I don’t get a light, cheerful feeling when I hear it. Over the years, I have learned how to embrace this word and its many applications in my life. It took several years, even after I became an adult, for me to creep my way closer and closer to that word. Responsibility has always been a sort of kryptonite to me. Showing up to my high-school football games wearing an entirely different uniform than the rest of my fellow cheerleaders cost me more than enough laps around the field. I consistently missed the registration period in college each semester which resulted in late registration, picked over classes, and a fee. I have to keep several calendars going at once just to remember who goes where and when. Those of my friends who know me well, always make it a point to email me, call me, or triple remind me when Bible study is at my house, or I have volunteered for anything (Keep reminding me, ladies, I need you!).

With a personality such as mine, having a kid like Elise can threaten to test my irresponsibility to the absolute limit. Starting with the day she was born, it seems as if each day my calendar has at least one entry just for her. Doctor appointments, therapists coming over, faxes to send, meetings to attend, tests to be run, blah blah blah…

I think I have some sort of handle on it by now, 7 years in! Yes, I still panic every once in a while because of the realization of a missed appointment, or forgotten email, but I’ve decided it’s about as good as it’s gonna get!

I have chosen to take Elise’s life and well-being onto my shoulders. It has always been heavy, but only lately, as she grows older, has it begun to feel crushing. When dealing with kids with severe brain injury, things typically get worse as they get older, not better.

When I take Elise to an appointment to see her orthopedic surgeon, gastroenterologist, neurologist, or even just the dentist, I seem to use these meetings as a gauge to measure how good of a job I am doing. After all, her bones, muscles, teeth, intestinal health, seizure control, behavioral issues, and much more are all in my hands. Not to mention her happiness, comfort, and overall quality of life. The way Elise looks, feels, acts, and reacts all feel as if they are hoisted up onto my back in a great big package, ready to be dropped at any moment.

For example:

Kids with cerebral palsy have to be stretched and ranged many times a day to maintain good range of motion in each area of their bodies. When I pick Elise up out of her bed or wheelchair, she can seem like the Tin Man from The Wizard of Oz, as if all I need is an oil can to loosen her joints and muscles. When she is tight, I blame myself. I need to stretch and range her more. We have been told that if Elise doesn’t wear her leg braces to keep her legs as straight as possible at night, she will definitely need a more complicated and serious surgery on her hips. After wearing a lower body cast for 7-8 weeks, one leg will be left several inches shorter than the other. Leg braces, huh? That sounds easy enough.

Now, picture my husband and me wrestling Elise around on her bed or mat like a stuck pig, trying our best to strap on these “Robo Cop” looking leg braces to her stiffening, squirmy, bending, crazy legs, only to be met with a little girl that definitely does NOT like leg braces! Every night, I look at those leg braces, more often off than on, and see a future of surgery, casts, and uncertainty. So, what to do? I choose to throw it up onto my back and add it to my ever growing guilt.

Then there is the matter of brain stimulation. Elise can’t explore her environment without someone bringing it to her. She can’t walk around and see things, hear things, touch things, manipulate things, and just experience life. I have always felt a major responsibility to create an environment around Elise that stimulates her brain. Lights over her bed, home-made tactile trays, endless toys that vibrate and light up, and lots of loving hugs and kisses. It will never, ever feel like enough, though. Never. I am always left with a pit in my stomach over worrying about Elise being under-stimulated.

In many of the earlier therapies that we tried in the first several years with Elise, there was definitely a theme of, “If you do what needs to be done for them, they will improve in every area.” The responsibility of our kids ever becoming any better was put squarely on our shoulders as parents. “Do what you have to do!” was their mantra.

The truth of the matter is, though, no matter how much I stretch and range her, or how much Botox we inject into her muscles, she still has CP!!! I can’t change that. No matter how many times I suction her and pump medication into her, it will always take her longer than normal to get over infections. I can’t change that. She will always have mysterious bruises pop up on her body from the odd ways that her body moves in her various chairs, standing frame, and car seat. I can’t change that. All I can change, really, is how I react to these inevitable situations. I know that, in reality, there are variables concerning Elise as a whole that I cannot control. This is an area that I have had trouble giving over to God. I haven’t really asked Him for much help yet.

I can’t even begin to count the number of times someone has said to me, “God doesn’t give you anything that you can’t handle”. Well, I have heard it explained another way that makes way more sense to me. God does give you more that you can handle. Only then do you call to Him and trust Him to come along and help you “handle” what you have been given. I, personally, can’t handle Elise. My marriage can’t handle Elise. My family, as a whole, can’t handle Elise. With Jesus, though, we DO handle her and all that comes with her. All of that responsibility that I just love to carry around on my shoulders is taken down and taken over by Jesus himself. All I have to do is ask.

I tend to be the one to feel like a failure when it comes to these things. My husband, on the other hand, sees it as an unreachable goal of perfection that can never be reached. He’s more of a laid back kind of guy. There’s not much guilt being felt on his side of the court. I will always need a certain amount of it, though, to nudge me into the direction I need to go, but I think I can learn a thing or two from my husband. He loves Elise just the same, but doesn’t have the overpowering need to achieve perfection (a perfection, by the way, that doesn’t even exist!). Heaven forbid if she someday has a cavity, needs a surgery for orthopedic issues, or disrupts all of Chili’s by screaming and hitting herself. All I can do is all I can do.

Believe it or not, some of the wisest words have come from the orthopedic surgeon that ordered the leg braces in the first place. He said, “Do what is best for your family as a whole. If Elise screams at night when wearing the braces, try again another time. Don’t sweat it. The health of your family is way more important than the health of her hip joint.”

No one can live life here on earth and not bear some sort of burden. I think we just all need to look at our burden for what it is. I am personally making mine heavier than it needs to be. Yes, Elise and her care will, at times, cause me a certain amount of worry, strain, and struggle. But I am slowly realizing that the responsibilities for her that I carry on my back are lightened each day by my husband, parents, friends, therapists, doctors, teachers, and plain old strangers that may send a prayer our way. Most importantly, though, is the knowledge that when I get too weak to carry Elise and her issues on my own, Jesus is there to pick her up for me and hold her in his arms, giving me the time to regain my strength again.

Responsibility. Just as a child cringes when presented with this word, I recoil at the thought of any more responsibility being thrown at me. The reality is, though, that in order to be a good wife, mother, and friend, I have to look responsibility straight in the eye, and decide that I am, after all, not alone.

I just need to take a deep breath and realize that her life is not in my hands, but our lives are in His. No matter what burdens I carry on my back, they are only as heavy as I allow them to be. God is always there, waiting to be asked for help.

"Come to me, all you who are weary and burdened, and I will give you rest.

4 comments:

You are a beautiful soul...I can only relate to a fraction of what you go through...and knowing that, I am able to say that God is doing a great work in you and in your family.I'm going to save this to read again when we face the next challenge with Luke (or Sam for that matter); the times I feel overwhelmed by the burden I choose to carry around instead of totally allowing God to carry it. Thank you, sweet Ashley, for reminding me.

I found your blog from another blog that I read...Wanted to delurk and say thank you so much for this post. I have a special needs son, and today has been a hard, hard day for this momma. The weight is so heavy some days. Thank you for the reminder that He is there ready to take it from me.

Pam, thank you for your kind words. I am so glad that you are able to see your own struggles in what I write. We all have them, but moms with special needs kids bear something that most can't imagine. Please keep reading, and I will pray for you to have lighter days ahead.